I have never been called a ‘Beauty’ but my chronic illness put up a barrier between me and the world every bit as tangled and high as Briar Rose’s thorn hedge. Being struck with M.E. really can feel like being ‘cursed' – one day I was enjoying a perfectly normal life, the next poof! it vanished.
Even after nine years, trying to manage and learn about my condition often feels like trying to hack my way through a tangled, thorny mess.
And of course...I do sleep a lot

Tuesday, 30 July 2013

Me again, having the urge to write here again for the first time
in a long while. It almost goes without saying that I'm angry and sad. Who
wouldn't be, on a day where a UK Court of Law decides that discrimination
against disabled adults can be legal?

Why did I stop writing in the first place?
Partly because the blog went in the direction of trying to keep up with
scientific state-of-play on M.E., only for me to discover I lacked the energy
and cognitive ability to do that well - it was being done superbly by other
people. Partly, I went through a long-ish relapse when energy was very
low and linking to stuff I felt important/interesting via Facebook was simply
much more ‘do-able’ than putting together blog posts. And partly, I needed to for
a while stop submerging myself in news and information about my illness – it already
dominated too much of my life, and I wanted the internet to be my portal to the
outside world, somewhere I could put my thoughts and feelings and life before
my chronic illness. Pretend, if you like, to be ‘normal’.

It’s good that I stopped. Not least because it spared people
loooooong rants last year at Paralympic time.

And now that I’m writing again, this isn’t going to be an ‘M.E.
Blog’ anymore. During the ‘quiet months’, a lot has changed. When I first wrote
on here about deciding to start using a wheelchair (remember how excited I was????) my biggest fear when
I went out was of being looked at with pity. It is now of being not only looked
at but treated with hostility. Of being automatically labelled in many minds as
a ‘scrounger/shirker/faker/thief’. Of being seen as a legitimate target for sneering, accusations and abuse. Things have
changed that much, that fast. Until we have come to the point where forcing disabled
people and carers from their homes is supported by law. Here, in the UK, in the
twenty-first century.

So fair warning, Wood of Thorns from now on is likely to be a lot
about me being angry – and sad, and bewildered and sometimes despairing and
sometimes riotously joyful .

But today, it’s about fear.

I think we all have a ‘3a.m fear’, some persistent imagining that looms suffocatingly
up in the dark insomniac hours when your defences are low. I’d like to share mine with you, so you know
where I will be ‘writing from’:

In my 3a.m. imaginings, something has happened to Anthony,
removing at one stroke husband, financial supporter and carer. In one stroke, I
become utterly dependent on the benefits system for food, warmth, a roof over
my head and the ability to travel further than the end of the street. The home I love is, of course, deemed more than I need (?deserve?)
since it has more than one bedroom. So I lose it. I try to find homes for my
beloved cats, often my only company day after day, because I cannot afford to
feed or care for them properly. How empty my home and life is without them.
Without a carer, my illness worsens, and it’s decided that since I need care, I
must be placed in an institution – since that costs less than providing care in
the home, with the added bonus of making me invisible. I refuse to go, so I’m
sectioned. Forcibly removed from my home. And at 3a.am, when this happens? My
neighbours do nothing. Because after all, the government knows best and the
books must be balanced.

There isn’t a single day, however bright, that this fear doesn’t tag along with me like
a second shadow. I used at least to be able to tell myself it was an unrealistic scenario, but today I...just can't.

And having said that, I ask you to bear in mind – I am one of the lucky ones. I’m one step away from
the edge. Too many people have already
fallen over it, because no one will build even a tiny fence to stop it
happening.